Hello all! Introduction, my MRI pic, and my concerns (worries?)

General
1
Hello all! I was diagnosed with Chiari malformation type 1 on January 23rd and have been reeling ever since (well, I suppose in some ways, before as well). I also have Hashimoto's thyroiditis and fibromyalgia. My rheumatologist sent me to a neurologist as I had so many neurological symptoms with my fibro: tremors, palpitations, feelings of ants crawling up the side of my head, one leg starting to feel heavy and "asleep" with pins and needles, severe fatigue, muscle weakness (I call it my body "humming"--it just feels like jello all over), horrible body aches, stiff and sore neck and shoulders almost daily, spasticity and exercise intolerance, foggy thinking, occasional hazy vision, severe headaches in the back of the head that shoot forward and get worse when I lie down, and so on. I've had many of these symptoms for literally decades, but it has become significantly worse in the last year and I've been off work--I'm a middle school teacher--since October. It may be notable I had two back surgeries, both microdiscectomies/foraminotomies/laminotomies at L5/S1 in 2006 and 2007 after the disc was ripped apart during childbirth (whee).
The neuro wanted an MRI to rule out multiple sclerosis, and that's when the Chiari malformation type 1 was discovered. He was completely dismissive, saying it had nothing to do with my symptoms, and attributed it all to my fibro (and possibly thyroid). I'm a bit bothered because he never looked at the MRI images himself--he just went by the MRI report. The report makes no measurements of the herniation, but simply says I have "very minimal cerebral tonsilar herniation." Best I can determine using the images and software, the herniation is between 3-5mm. It all just didn't sit right with me. Plus, from what I understand, the size of the herniation is not what matters, but I could be wrong.
Here is one of my MRI images showing the Chiari:

It seems to my unprofessional eyes my spinal cord and brain stem are compressed and there isn't much room for CSF flow, but what do I know. :/ What do your more experience Chiari-eyes see? (I take everything I read on the internet with a grain of salt, so I understand no one can diagnose. I'm seeking insight and input from experience, not diagnoses or medical advice.)
I really advocated for myself with my PCP, who I adore, and after a good discussion, she decided to send me to another neurologist for a second opinion. She's also sending me to the neurosurgeon who did my two back surgeries for his opinion as well. I do not want surgery, but I want someone to convince me the surgery isn't warranted and the symptoms unrelated to the Chiari. Right now it seems everyone is going by what one radiologist typed.
I also sent my records, MRIs, etc. off to Dr. Ulrich Batzdorf at the Chiari program at UCLA yesterday. The doc will review my material and then they will contact me in the next 1-2 weeks to let me know if they consider me a Chiari case. In the meantime, I see my new neurologist tomorrow...I have hope that she'll take the Chiari more seriously, but we'll see. The more time passes, the more symptoms develop, the more convinced I am that the Chiari is behind a lot of my issues--but perhaps I'm just convincing myself, I dunno. My continued fear is I'll be told it's nothing, la la la, move along. I'd like someone to at least investigate further if I'm to be truly reassured of that.

I've come here looking for insight, information, support, and kinship--thank you so much for welcoming me here. I am looking forward to your comments! In the meantime, back to perusing the forums. Take care all!
2

You have come to the right place. I have just recently joined this group but already feel like its where I belong. To me it sounds like you do have some Chiari issues and I would say to not pay a lot of attention to the neuros but go more with what the UCLA tell you. When I got my info about Chiari, at first I thought maybe, maybe not until I found on one website it said, trouble concentrating, foggy thinking and forgetful. That's what I had tried to explain to the neuros, doctors, and head doctor they sent me to. I kept trying to tell them about my spells. My lawyer has me writing down every time I have what I always called brain farts. I am having a lot of problems cooking, talking, pain, etc. I wish you all the best and I pray they will be able to give you some answers. Praying and sending you lots of love to help carry you thru.

3

Have Dr. B check for Ehlers Danlos (EDS) because cervical instability must be checked, and many people with EDS have that. Do you have hypermobile joints? Yes, your symptoms appear related to your CM, and your CXA angle and crowded brainstem (BI). Not a doc, but it appears that way, and Dr. B should comment on that for you.

Don't be surprised if surgery is suggested for you since you do have structural crowding issues, but get back to us after you see Dr. B. Please check Doctors tab--appointment 101 suggestions, and also search anything here on Discussion main page, and check Resources tab above.

Welcome to our site,

Geoff.

4

Glad we both found this place, littledeb! It really does seem like a great community. I'll keep following your saga while continuing to search through this site and all the resources it offers.

Thank you Geoff. I've read about EDS but it just hasn't connected with me. When I was younger, I was definitely flexible, but I wasn't at all hyperflexible. My skin isn't elastic at all, scars don't stretch, and other such symptoms don't describe me. I do have very noisy joints and have been able to pop virtually every joint I have since I was young, but that's it.

I won't be surprised if surgery is suggested, and again, the main thing I'm looking for is verification that the Chiari is a part of what's going on with me, if not a major part. Most of my docs are ascribing the symptoms to the fibromyalgia, and I understand that, but it really seems to me the Chiari is playing not just a role, but a significant one.

I'll let you know what Dr. Batzdorf says, and also what the new neurologist I see tomorrow says as well.

5

Unwritten
I just consulted today with a NS in regards to my chiari. My nl thought some of the issues I have were chiari related but others were neuropathy. The NS said the tongue twitching, facial numbness, stiffness of lower limb muscles, are related to my condition. However both NS and nl did not recommend surgery at this time. My symptoms have not interfered with my work or leisure skills. I also am a PE teacher so I am still active. See what ucla says and go from there. Btw my chiari is 2.2cm. The NS did say WOW! He could not believe I just started with symptoms 7 months ago! Good luck and keep us posted.

6

Unwritten,glad you have found this group of people,lots of the patients here are more knowledgeable than the reg. Neuros.I had a borderline case but was very symptomatic for many years.The symptoms you’ve mentioned sounds like chiari.Hope you get some answers from UCLA NS.I am one who’s herniation was hardly noticeable but the surgery has been a great help for me.The tonsil was the problem in my case.

7

Thank you everyone. I saw a neuro for a second opinion yesterday, and now I'm more confused than ever. She looked at my MRI and said she didn't think it looked like Chiari although maybe if she was bring generous she'd call it a Chiari 1. :( I don't see how that's possible looking at my MRI, but what do I know? I'm not a doc. This is so fatiguing and discouraging. This chase is wearing me down.

I had a nerve conduction test--that was fun--and right ulnar nerve isn't great but otherwise pretty unremarkable. I'm getting bloodwork checking for another autoimmune disease (I have Hashimotos thyroiditis), a cervical MRI, and an EEG. She's requesting the radiologist measure the Chiari herniation as it's not reflected on the report. While I'm not at all thrilled to have more tests in my future, more information cannot be a bad thing so I'll be glad to add those to my collection.

It's all so confusing. The first neuro dismissed the Chiari and felt my fibromyalgia was behind my symptoms. The second neuro dismissed the Chiari and feels autoimmune disease is behind it. *sigh* I'm very glad I sent all of my paperwork off to UCLA--if Dr. Batzdorf says it's nothing significant, I'll feel better believing it.

From what I've read this is sadly a typical experience for Chiarians. Boooooooo.

Thank you everyone for your welcome and kind--and educated!--words. I am so grateful I found this group!

8

Hopefully Dr. B will be able to help you. In my experience I have found neurologists to be of absolute no help with chiari. It's only treatment is surgical so a neurosurgeon who sees a lot of cases is your best bet for accurate answers! Good luck and keep us posted!

9

Thank you so much Anglyn. I was so horribly confused and discouraged yesterday. Today I'm just more tired, in every sense, than anything. I am so grateful for this community--brand new to it as I am. Thank you again.